Who Lives, Who Dies, Who Tells Your Story?

In the Broadway musical Hamilton, the revolutionary story of “America then, told by America now” , George Washington tells Alexander Hamilton, “You have no control: Who lives, who dies, who tells your story?”

In Hamilton, this question is a matter of history—how are the founding fathers and mothers are portrayed or forgotten. In the matter of measuring global health, we ask the same questions. Who lives? We use birth records to establish where and how many people are born. Who dies? We use death records to know where and how many people die and from what. Who tells your story? What of all the life and health between birth and death? Birth certificates, death certificates, and medical records comprise a giant set of data that statisticians use to measure health by organizations such as the Institute for Health Metrics and Evaluation (IHME).

IHME’s signature program is the Global Burden of Disease study (GBD). GBD aims to be a comprehensive statistical analysis of both fatal and non-fatal health conditions on a regional and global scale. It does this using Disability-Adjusted Life Years (DALYs) as a measurement of the loss of “healthy” life caused by a health issue. Hundreds of diseases, injuries, and disabilities have been assigned “disability weights” on a scale of 0-1 to represent the magnitude of the disability’s affect on a person’s health. These disability weights have been agreed upon via polling across geographic, education, and socioeconomic factors. Notably absent? People with the disabilities being weighted. When people were polled on their own disability, they were found on average to rate their disability less severely than people without the disability and were excluded.

The number of years a person lives with a disability is multiplied by that disability’s disability weight. The result represents the number of years of healthy life lost for that person. Years of life lost to premature death are also expressed in units of years of healthy life lost. Using years of healthy life lost to measure both disability and death, allows fatal and nonfatal health issues to be directly compared and combined into a comprehensive measure of health.

The great thing about DALYs is that they expand the concept of measuring health beyond that of just measuring fatal conditions. Non-fatal conditions such as low back pain, autism, broken bones, and anxiety are aspects of health that affect people’s lives. They drive much of healthcare spending and absolutely should be considered and counted when looking at health.

The problem comes in how non-fatal conditions are counted in the DALYs system. In an effort to look at fatal and non-fatal health issues simultaneously, the unit of years of healthy life lost equates living with a disability to be being some percent dead.

Let’s try out some real numbers!

Dying one year prematurely is equal to 1.0 year of healthy life lost, or 1.0 year spent dead. Anxiety disorder (moderate) has a disability weight of 0.149. Living with a moderate anxiety disorder for one year is equal to 0.149 years of healthy life lost. Using DALYs, the years of healthy life lost due to disability have the same unit as the years of healthy life lost to premature death. That means those 0.149 years of healthy life lost due to a moderate anxiety disorder are equal to 0.149 years spent dead.

The problem?

Disabled people are alive.

Disabled people are alive and deserve to be treated as such by everyone, including the medical and public health professions. Perpetuating the idea that disabled people live partial lives—that they are some percent dead—does real harm.